FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.

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Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Saturday, January 29, 2011

Rotation Diet, Protein Intolerance and FPIES?

FPIES is on the spectrum of Protein Intolerance. Much like typical IgE allergy has a spectrum of reactions, from a scratchy throat, to flushing, to hives all the way to anaphylaxis. FPIES is anaphylaxis of the gut. It is a severe protein intolerance. And, just as with typical allergies....some kids have just one IgE allergy and some have multiple. With Protein intolerance's, some kids have just one (milk or soy or milk and soy- referred to as MSPI) but many kids have multiple intolerance's. With FPIES, some kids have just one trigger- milk or soy, or rice and oats; but again many have multiple. And then still, many kids have all 3- Protein Intolerance, FPIES, and IgE allergies. The bridge where they all cross can be confusing.

With protein intolerance's, you may be able to have a food if it is cooked or the oils or in low threshold amounts- the body can "cope". Protein intolerance kids can often also handle a rotation diet. A rotation diet can avoid a "build up" of the proteins while still keeping the foods in the diet for their nutritional value, and while also building up the bodies tolerance of the food- training it, with each small incremental dose that the food is foreign but safe. With each dose, the body building more tolerance mechanism and less attacking mechanisms.

My question remains: is this safe in the FPIES child? The FPIES child with protein intolerance that the body is already primed for FPIES trigger attack mechanisms. Is the body so efficient at producing those mechanisms of attack...mechanisms designed for protection against viruses and toxins but attacking simple food proteins in the FPIES child....that every intolerance is vulnerable for FPIES?

It is not possible to include known triggers in a rotation diet, but could it work for trialing foods? Little man seems to build up intolerance's to foods at day 3-4 (or beyond); his body recognizes it as unsafe almost immediately (we can always look back at logs and see in hindsight that nothing was coincidental, that all symptoms eventually led to something) but we press through because we can't fail a food at the first signs of hiccups, or irritability or some disturbed sleep....when all these things can just be a coincidence and we would have no menu! And yet, none of those symptoms have ever been a coincidence, and his intolerance's build until we have to pull the food as it is unsafe, causing too many off-baseline symptoms or behaviors, or it has caused a trigger reaction. It would be unsafe to keep a food in the diet (even in rotation) if it is causing symptoms of off-baseline because the waters would get really muddy -- how would we know which foods were causing which symptoms and which foods are building symptoms and which ones are causing 'just' adjustment symptoms?

With an FPIES diagnosis, you are given a set of instructions for food trials at home, there are variances to these schedules but they are all similar in that they are small doses over long periods of time. The reasoning behind the slow introductions is to stop before the symptoms build to the full blown fail....the tricky part is finding that line of "are these build symptoms" or "are these body adjustment and/or intolerance symptoms?" Keeping a food and symptoms log has been essential for this; although many FPIES children react from the first dose of the food trial. A second reasoning behind the slow introductions for protein intolerance is to teach the body "foreign but safe".

My goal has been, of course, to do this for Little Man. To introduce foods in his diet (in his muffins that he enjoys so much would be ideal) slowly, 1 tsp at a time....to build his tolerance while monitoring closely for symptoms. BUT- without a base diet first, or with missing micro nutrients....we aren't at that place yet to be able to execute this ideal FPIES scenario for food introductions.

So, that got me to thinking about a rotation diet- would a rotation diet of trial foods help us to teach his body foreign but safe without overwhelming it and pushing him past his tolerance levels? Would it make it less daunting to take breaks from a food beginning to cause symptoms? Little man seems to do ok with foods for the first 1-3days, and then intolerance's really begin to add up. Is this because they are closely related to the proteins he has had reactions to (grains and dairy?). This is why I have been picking foods he hasn't ever had before, or that aren't related to his FPIES triggers. Millet is a seed but it is in the cereals food family so we were taking a risk on it. Millet is still a mystery.

To execute a rotation diet, it would need to be closely calculated out - trial a food for 2-4days, give the body a break (3-5days)- reintroduce....teaching the body- foreign but safe (building the Th3 response to override the Th1 response mechanisms?). Similar to oral immunotherapy that is being found successful for some allergies?

A few important FPIES considerations:
1. It would be critical to not go too long between re-exposures or the body will 'forget' it's tolerance mechanisms.
2. Also critical to not push if reaction symptoms persist or build (body is building attack/Th1 mechanisms instead of oral tolerance/Th3).
3. Essential to stay at dose tolerated (or less) if symptoms begin to build.
4. To return to ONLY safe base diet during the "break" if there are any off-baseline symptoms noted (and not rotate to new trialed food).

In my head, on paper, this works....with Little man it hasn't, yet....

3 comments:

Joy, I must say we initially followed the "rotation" diet by accident since the majority of the time Brendan's oral aversions dictate. He will eagerly try a food for two to three days and then lose interest. We then sometimes successfully reintroduce four to five days later. The amount of food is always small but unfortunately it doesn't usually work for us. He reacts anyway. The only foods he has tolerated in this manner is pineapple and possibly corn. My only concern is he has not had enough of these foods for me to call it "safe" because he is such a delayed reactor. Does that make sense? Just my experience thus far. I like the idea of a rotation diet but still wonder what will happen if/when that "threshold" is met? Ah...I could go back and forth with this...such is life with FPIES though!

Yes, that makes perfect sense Brenda. I am still going round and round in my head because there is somethign to this- I just haven't pinpointed exactly what yet...I think I put another piece together tonight and am trying to put the words down to make it make sense (outside of my own brain!) :) The delayed reactions is what is the missing component- are these delayed reactions? Are they build reactions? Are they adjustment reactions? Are they protein intolerance lead to FPIES triggers? Are they super efficient bodies that have chronic issues until acute on chronic displays itself....the answer is here somewhere.....right here in this haystack....

Global FPIES Day

The FPIES Foundation

This blog is the sharing of our personal story of FPIES and the specific accounts, details and perspectives about how FPIES affects our Little Man. FPIES is a syndrome and can present with a spectrum of symptoms. A medical team familiar with FPIES can help with the specific needs from symptoms that present in your child. Information shared here does not represent the views of any organization I may work for or be associated with, and should not replace your own instincts or the advice of a doctor knowledgeable in FPIES.

What is FPIES?

In my own words...FPIES is a severe delayed food allergy of the gut, it is understood to be a T-cell mediated response, a Non-IgE Food Allergy in which food is considered a foreign invader and the body fights, or attacks it, until it can violently expel it; although the exact mechanisms are still not well understood.

Symptoms include: profound vomiting (often to bile), diarrhea and/or constipation. These symptoms can quickly lead to: lethargy, low body temperature, low blood pressure and in severe cases, sepsis-like shock. And still yet, many parents report children also experiencing many discomforting symptoms while the body fights this reaction and these can include: extreme stomach pains, excessive gas, runny stools with or without mucus/blood, acid reflux, rashes/eczema, sleep disturbance, and agitation/inconsolable crying.

FPIES is a clinical diagnosis (based on symptoms and history) there is currently no test for it.

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About Me

I am a mom of 4 boys. Our youngest has FPIES. I also work part-time as a Registered Dietetic Technician. Nutrition is my passion, my career, it now envelopes my entire life...
I am taking this one day at a time, putting together pieces of the puzzle for our Little Man's FPIES.
www.thefpiesfoundation.org